An update :

I had my appointment yesterday and I've been told that both of my implants have ruptured. There are also silicone deposits in my armpit .

BUT I'm slightly doubtful . I have saline implants (with a silicone outer shell) which when rupture , rapidly deflate . There is no deflation , only intermittent and painful swelling in one implant .

The lovely technician did seem slightly unsure about the make up of the implants and also admitted that she doesn't have much experience with implants.  
 

They did offer me an MRI and then changed tack saying it was pointless as silicone deposits are evidence of a rupture. 

My left breast is still intermittently swelling and burning  and it is harder than the other side .

I still think there may be a possibility  that the swelling may be caused by fluid - possibly behind the implant . I can't understand how they've ruptured when they are still in tact - again saline implants deflate rapidly . Also, how can they tell a silicone deposit without testing ? (I don't disbelieve the doctor , I'm just not sure how they would know ?)
 

 Do I now go back to my GP and push for an MRI? 

Hi PinkLadyAppleCourt,

I agree fully with your thoughts. An MRI or even an ultrasound would detect whether there is fluid or not. If it's an ultrasound they can also do a guided aspiration at the same time to test any fluid detected (at least 50mls is required for CD30 testing, 100mls is better and everything collected should be sent away). I strongly recommend you push for an MRI or ultrasound. You're right to advocate for yourself here. Unfortunately many doctors still are not connected well enough to the risks and protocol around testing and diagnosis. 
 

Again, you can take the NCCN Guidelines along with you to explain why you'd like further testing to rule out BIA ALCL. if you have any trouble convincing your doctors, please let me know and we can chat offline with more ways to ensure you get listened to. It's really important this is done prior to any surgery to remove the implants. 
 

Good for you for pushing for what needs to be done. It's so frustrating that it's often the patient fighting to get access to the right testing with BIA ALCL. 

Sorry I didn't make it clear in my last message , I've had the ultrasound and that's how rupture was decided.

The technician did say there was no fluid but said both have ruptured  . Although they didn't seem too sure about the make of the implants and it was a bit of guesswork about what was what (I'm not criticising the technician at all , it's just making me wonder if something may have been missed). 
 

I have since spoken to another doctor who deals with reconstruction and they said if they had ruptured they would absolutely deflate unless it's more of a "tear" in the shell . They also said there's a possibility that there's a fluid build up behind the implant .

 I do think it's worth going ahead with an MRI to be sure . 
 

B

Thank you for all the info - you've been very helpful ! 

I explained I had Allergan textured implants , it was more that the technician couldn't work out what the shell was, what the inside was etc - she had to use the other breast as a guide . However, it then turned out the non sore , non swelling breast is worse than the other in terms of rupture (I have no issues with this one at all).

I definitely want to avoid surgery ! The mastectomy itself was gruelling and painful (Oh dear lord the drains are like nothing I've ever experienced !) .

I honestly thought that once I had it , I could forget about breast cancer etc and to find I have Allergan textured implants with the risks they bring is a bit frustrating ! 

So I absolutely want to 100% make sure it is a rupture before a scalpel even gets pointed in my direction . 

I feel you with the drains!

It's so unfair that women who've already been through breast cancer now have another type of cancer to contend with caused by the medical device that was supposed to be the solution. 
 

Would love if you keep me connected and I'm here if you want to talk about anything xx 

Another update ...

I've had a letter from the clinic confirming their findings... no mention of the swelling I was there for (it wasn't swollen at the time , it's intermittent). I offered photographs but they didn't appear to want to see them

The letter mentions silicone deposits , mild capsular contracture , and "abnormal signal change..."...

Any ideas what this could mean? 

So sorry, I completely missed this message!

It sounds like it could be anything. Abmormal signal change I think just means they've picked something up on the MRI that they can't identifiy (e.g. infection or swelling). Have you had your follow up appointment with your doctor to go through the results yet?

BIA ALCL symptoms have been confused with capsular contracture in some cases I'm aware of. Does the swelling continue to be intermittent? What have your doctors advised next steps are?

xx

I'm still waiting for a referral to my consultant :neutral: 

I was told I'd be seen quickly so I called up 3 days ago and they have no record of a referral for me. I need to call again next week but I might have to go back to my GP and ask for a re referral.

The swelling is still there and is still intermittent. When it swells it is very uncomfortable - a heavy pressure feeling and also it itches and burns from the inside.  

My underarm also feels bruised and lumpy when it happens . 
 

When the swelling eases , the implant feels very firm . I've never had these issues in the 7 years I've had them so I just want to know what it is ....

So sorry to hear. When you finally get your appointment, please share the NCCN Guidelines with your doctor (available at BIAALCL.com) and ask for a fine needle aspiration so they can test the fluid. They can do it guided by ultrasound so can find any pockets of fluid there and should collect at least 50mls of fluid. Very specific testing is needed. 
 

Hang in there. I know it can be frustrating and feel like you're going in circles but it's so important you advocate for yourself to get the right testing and don't take no for an answer.